Hi. I’m Kacy. I have an AVM in my right hand. Similar to many, I had 3 alcohol embolizations, the last 2 got an infection, tried a new AVM center in NYC but once they got in they decided not to treat. I am still paying off that $14K. I went to Arkansas and they recommended laser treatment. Anyone have experience with this? Using a compression gloves helps but I am seeing new symptoms like my fingernail split in half. 
Hey Kacy,
Similar situation in my right arm. I have had just about every procedure available aside from coils and glue. When I looked into the laser procedure they told me laser therapy is mainly for varicose veins and they explained that varicose veins are close to the surface, whereas with mine (and I assume yours) the clots are thrombosed deep into the muscle, bone, tendons, etc. Of course I’m not a doctor, so maybe your situation is perfect for laser.
I really appreciated opening my email and seeing your post. I guess sometimes it can feel very lonely and sad when I get caught up in my own head thinking about my arm. I’m almost 50 and it has been one heck of a journey.
Like you, I use a compression sleeve and it helps to some extent, but it’s also difficult to type and have full range of motion with the sleeve on, and it’s sweaty in the summer months. That said, I’m thankful and love that it comes from Germany and has my name on the little tag lol.
Cheers,
Marty
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Hey there!
Ive got many AVMs in my left hand, and arm. I’ve only done one alcohol embolization and am really doubting I’ll ever do it again – my skin never healed well, and I’ve got less mobility than I did before the procedure.
My current (and new) doctor has suggested that I look into taking thalidomide. Have anyone you’ve seen mentioned it? I haven’t decided for or against, yet; though I’m leaning towards for because it seems like the least invasive thing I can do right now.
I’m sure @Nathalie, @Maryg and @Heather1 have been offered or used thalidomide. It is a drug that hasn’t been mentioned for years until recently.
Hi, I was on it for a little while. It’s one of those drugs that is a bit scary to think of being on but I was reassured how it is being used for AVMs and other conditions now. There are rules around not getting pregnant on it so you have confirm what contraception you are on. I was told it suits high flow AVMs more. I found it okay compared to some of the others but I recall getting a bit more tired on it. Mary
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My son is on a medicine called Mekinist. His Doctors believe his AVM (on his right hand) is caused by the BRAF genetic mutation. Since we started this drug back in October 2022, the AVM has not grown and he is in a lot less pain. He is seen by his team every 3 months to make sure the medicine is not causing too much trouble with his body (mainly liver function and cardiac.)
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Thank you all for your replies. I am trying to get into Mayo Clinic. I think I am about to have my first ulceration coming up under my fingernail, which has now split. I will probably take a trip to Colorado again soon for an embolization while I am waiting on Mayo. I have high flow and lots of deep and surface vascularity so maybe one of those drugs and/or sclerotherapy will help. I will certainly ask Mayo and Dr. Yakes about it. So happy to have this group!
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